Tips and Tricks

Things that we do to cope with the everyday problems associated with Narcolepsy

The idea for this addition to the site was submitted by "Shawn" and I thank him very much for that. To honor that, his "tips and tricks" will be the first posted here. Thanks again, Shawn. If you have any ideas, tips or tricks that you feel would be helpful to other Narcoleptics, email me at: Cataplexic (be sure to put "Tips" in the subject line) and I will add it on my next update.

Tip and/or Trick

How many

Getting up in the morning

Why can't I get everything done?

Staying awake at work

Alternative Treatment?

Getting up in the morning is the hardest thing I have to deal with every day. Here are two methods I use the help me.

Method 1

I will take medicine and go back to sleep. After an hour I am ready to get up and suspect that is how normal people feel when they get up in the morning. Some preparation is necessary the night before. I have to make sure that my meds are next to the bed with a glass of water and an alarm clock to wake me. Once the alarm goes off, regardless of how I feel, I muster enough energy to take my meds and go back to sleep. I usually do this on the weekends because I do not have to get up as early as I do for work.

During the week I get up very early for work. Once I muster enough energy to sit up and take my medicine (Ritalin), I force myself to get to the shower. Once the water is warm, I get in and sit down (it really is ok to sit down while taking a shower and maybe even safer.) I also found it important to get my head wet right away. After about 20 minutes I am able to finish up and get out. Next is the routine of getting dressed. I do it the same way every morning. After finding something to eat, almost an hour has passed since I took the meds and I am safe drive to work. It is only by establishing a routine and determination (will power) that this works. My wonderful wife helps me with this by making sure that my clothes are in the same place. I also enjoy my job. When I worked places that I did not like (not fun, rat-race, just plain terrible), it was 100 times harder to get out of bed.

If you want to try these methods here are some tips. Yes, it does not feel good to get up. Yes, for some it is painful. Yes, sometimes it is hard to find the knob to the bathroom door and having the lights on does not help. Yes, it will be the hardest thing you do that day. No, you will not drown in the shower if you fall asleep, just make sure the drain is open. Establishing this routine will take a month or two. YOU CAN DO IT! Do not let this disorder control your life. I am not saying you can control the effects of this disorder. I am saying that you control your life by how you deal with it. We can accomplish anything a normal person can. We just have to go about it in a different way. When you have successfully gotten up and are ready to take on the day, please remember this:

You have already accomplished more in the first hour than most people will accomplish in an entire day.

I purchased a clock radio with two alarms. I set one for music to start at the beginning of the transition from being asleep to being awake as a countdown. Time to start floating through daydreams and think about moving. I set the other for the alarm to go off 45 minutes to an hour later when it really is time to get up. I always had to spend at least an hour, often two, fighting through the transition period as far back as high school and it was still hard to get up. Hitting a snooze button seemed to make things worse. I didn't realize I was experiencing a variable combination of sleep paralysis and hypnagogic halucinations. Giving myself to permission to experience and enjoy the transition has made going through it every morning easier and shorter. Now I that I have accepted the process, I feel more rested and more in control.

Since I got my first dog, I find that it is harder to sleep through the alarm clock. He pulls the covers down and paws at my shoulder if I am not up at my usual time. I can always go back to bed after letting him out on Sunday morning.

Why Can’t I Get Everything Done?

I am always busy but never seem to get anything done. Here are some of the tricks that helped me.

Prioritize all activities

Since my useable hours of day are shorter than the average person everything must be prioritized. I obviously cannot do so many things that normal people do and many will never make it on my lists. The peer pressure of today’s society also expects many things of us. However most are not important to the big picture of someone living with symptoms of narcolepsy. Determining what is and is not important starts with your ethics, morals, views on life and then, by the time you have. Some things for example are flowers and gardens. My time is better spent making sure I have the energy to mow the lawn. Most neighbors would agree it is better to have the grass cut, than to have flowers and the grass 2 feet tall between mowings. This evaluation does not apply only to yard work but every activity including family events, social events, and even church activities.

To find out what you can cut out make a list of everything you do for 1 week. If that sounds overwhelming, just do it for one day and begin there. Then evaluate each activity and what would happen if it was not done or only done once a week or once a month. I am sure that there are many things that you can find that will have no affect if not done. Even the little things that only take a few minutes need to be evaluated. Reading the mail is another good example. Here is the basic rule I follow. If I did not expect it, order it, or request it, and I do not recognize it, I will never open it. When I get a bill it goes in the bill pile to be opened and taken care of at the appointed time. If it is a magazine I paid for, it goes in the read pile for when I do my reading. What is really wrong with driving a dirty car or no flowers inside and outside? After a while all these little activities begin to add up and you will have more time for other activities like recreation.

Then make a list and prioritize it. The ABC-123 method works well. Take everything that must get done and put them on the A list. The B list is for what should be done but is not as important as A. The C list is for things that need to be addressed but could wait. Within each list rate the activities. 1 should be done first and 2 next and so on. Then follow the list. Most importantly, stick to the list and do not do anything on B until A list is done. There is no thought expenditure on what to do next, just follow the list. Do this for all your daily and weekly activities for your awake or usable time. There should be some mention about doing activities that are appropriate for your state of awakeness. But will save that for another chapter.

Do the same things and develop a pattern for each day of the week. It may seem overwhelming at first but as it develops into a routine you will see its advantages. Once established, you will save more time because there will be less time spent making the list deciding what to do and eliminating the activities that don’t need to be done.

As our priority list for the day, week or month are created don’t forget recreation. It is a tendency of many to put such activities on the “C” list. Not only that but peer pressure of society today will look down on the narcoleptic taking time for recreational activities before doing others (society expected activities). The over-achieving tendency of a Narcoleptic will also have a tendency to put recreation last. However, recreation should be on the list and high on it. The health benefits of recreation are great, both physically and psychologically, but are too lengthy to mention here. My Great Grandmother gave me a great piece of advice one time when things were tough and I had my nose to the grindstone. She said, “If you keep it there, after a while the only thing you will know about (or that matters) is your nose and that hard old grindstone.” I had great respect for my Great Grandmother and would not have argued with her, (Not to mention the fact she much sharper and smarter than me.) but it took me over 10 years to realize the value of what she was saying. Obviously we must work before play. However, if time is not taken to do an enjoyable activity, this principal comes true faster than the average person, because time is limited and reduced by the symptoms of Narcolepsy. Don’t spend the many years I did living life against the grindstone. Even a few hours a week can make a big difference.

Finding a recreation may be a challenge. The key is to find something you enjoy. There are many that range from hiking to golf to knitting with fishing being my favorite. A family member has recently found painting to be an enjoyable recreation. For those who like the adrenalin rush, there are many things from auto racing to skydiving. Although participating in such exiting activities may not be safe depending on the severity of your symptoms. The point is that every person is different. If you enjoy it, are good at it and take pride in it, the benefits will be great.

When I feel a sleep attack coming on at work, I can sometimes avert it altogether by (of all things!) playing a quick game of 'tetris' on the computer. Luckily, I have an office-based job with computer access. I think that the way the brain has to work to get the little blocks down in the right order somehow kicks it back into gear. A few minutes later, and I'm fine (so long as noone sees what I'm doing . . .)

I suffer from diagnosed narcolepsy. It was so bad that early one morning I was driving a friend and my son on a hunting trip. My son was snoozing and my friend got out to open a gate. While waiting for me to drive through, he noticed that I had fallen asleep with my foot still on the brake.

Provigil was expensive and only mildly effective at best. Its effectiveness wore off after a few days. Of all the medications, Ritalin was the best but it made me nervous. It didn’t reduce my need for sleep, rather it seemed to jolt me awake. After taking it for 2-3 days to stay awake during the day, the lack of sleep caught up with me and I would start getting confused. Caffeine had no effect.

I then tried Phosphatidylserine, otherwise known as PS. Psychology Today magazine reported that it is effective for mental sharpness and memory which is the reason I started taking it. An unexpected side effect is that PS actually reduced my need for sleep without jolting me awake like Ritalin. In fact, I noticed that I was staying awake but it was a couple weeks after starting PS before I suspected that it was due to the PS. Since I started taking it over six months ago, I have fallen asleep briefly during the day only about three times and that was largely by choice after very long nights at work. In fact I no longer get tired and exhausted during the day and find myself staying late at work.

I did a search on several narcolepsy web sites for phosphatidylserine but only turned up that it’s naturally occurring in the brain. I did not find a reference to buying it as a supplement to treat narcolepsy.

If I take a low dose, one 100mg pill, it increases my memory but has minimal effect on keeping me awake. Two pills keeps me awake until mid to late evening at which time I might nap only briefly when reading. Stimulation like driving will now keep me awake. Three pills generally keeps me up late. PS doesn’t make me nervous. One side effect, however, is that it greatly enhances the effect of caffeine. A cup of coffee will now jolt me awake if I have to stay up very late. I purchase it at Vitamin World who calls it Neuro-PS. I am not recommending them over any other health food store, but mention it to correlate their formula with the above effects of their 100mg size pills that I take.

I would like to know if anyone else has tried it and how it has worked for them.

Best regards,
Don Judson
donjudson@yahoo.com